13 October 2014
There's an article floating around right now Aborting My Baby Oscar Was The Kindest Thing I Could Do For Him.
I was a part of a group on Facebook, all of us parents have a little one with Down syndrome, as well, we all have Facebook pages for our children. Some pages have special projects set up, some are fundraising, some post cute pictures of little ones with Down syndrome.
This article was posted on the page.
I read it.
The first thing that I noticed was that there was a statement that was obviously false - 'a genetic disorder which inhibits the ability to learn and develop mentally.' I'm not too sure where she found this, not too sure if this was her own preconceived notion of Down syndrome, I don't know. What I do know, this statement is clearly false. Children with Down syndrome are able to learn and they do develop mentally. No, they are not children forever. They learn things at their own pace, it may take a little longer, but they get there. 'Under the Abortion Act, termination of a baby with Down syndrome is a legal right up to the point of delivery.' Horrible. Upsetting. Incredibly wrong that this is legal. No, I do not support this in any way, shape or form. Disgusting.
There were a few statements in this article that are clearly false and ones that don't represent our children or my own personal views.
I gave my opinion on the article on this Facebook page which is set up as a safe and caring community and I got my butt handed to me. First, on the page itself, then in private messages.
Let me go back...I acknowledged what was incorrect and false, but I also gave my opinion on the article as a whole, how I personally feel about termination. I truly believe that we were not put on this planet to judge others. We need to focus on the decisions that we make as a family and what is best for us. Be good to others. Be kind to others. Who has the right to tell me what I can and cannot do with my body? Who has the right to tell me that my beliefs are false and ridiculous?
I was told that it's a shame that we grieved when we found out about Adele's diagnosis when we were 15 weeks pregnant. I was told that I should have been happy and welcoming of the diagnosis. I was told that I should have educated myself more on the outcomes of having sex with my husband. I was told that pro-life is the only way. I was told that I'm not a good parent. I was told that my opinions were wrong.
I am not for termination. I am not telling women that if they find out that their unborn baby is diagnosed with an extra chromosome, missing a chromosome, cleft palate, heart condition, you should terminate. Your baby will not be perfect. Who has that right? There are perfectly healthy pregnancies being terminated every single day. It is so sad. Yes, I do think that this needs to change, but it needs to be done the right way. Education and awareness.
For those who are pro-life, I support you, but for those who are preaching and holding up signs on the side of the road, yelling at others because they are scared and worried, shame on you. I have a goal and that is to help educate families, women, give them support, show them that I care. It is not my right to judge you. It is not my right to tell you that you are making the worst decision of your life if you decide to terminate.
Being pro-life, like the one who reminded me over and over again how horrible I am, you are doing the damage. You are getting up in people's faces, you are judgmental, you are harsh, not approachable and if anything, you are giving families an unhealthy outlook into the future.
Having laws set up telling a woman and families that they are not allowed to terminate when a diagnosis of Down syndrome is given, is simply wrong. Setting up laws that parents must meet with a genetics' counsellor, that they must speak with professionals, that they must meet with another family who has a child with Down syndrome, this should be law. Educate families instead of telling them that you will make the decisions for them. It is an overwhelming and frightening time and you are flooded with emotions. Support the family. Educate the family. Grieve with the family. Give them the tools and resources that are needed in order for them to make the best possible decision. James and I were given all of the tools necessary to make an informed decision. It is because of all of this that we felt like we were capable of moving forward on this journey. We are, to this day, thankful for all of the love and support that we received.
I was contacted by a very scared and worried mom-to-be, a few months back. She asked if I would go over to her house and sit down and talk about our journey. I went over with an open mind because I was once in her position. I sat with her. We talked. She was so scared. She didn't think that she could possibly go forward on this journey. How could her and her husband raise a child with Down syndrome? She was depressed. Her doctor wasn't giving her the support that she needed. She was in a very low place. Baby also had some other health concerns which only added to their worries and upset.
I gave her the facts. I gave her support. I gave her my perspective. I told her that we were once in the same place. We were scared and worried and thought that there was no way that we could raise a child with Down syndrome. Today, she is 33 weeks pregnant and anxiously awaiting the arrival of their baby girl.
This is what families need, they need somebody who understands what they are going through, they don't need somebody preaching to them. She didn't need to be judged by me. She needed to talk and feel supported.
Going back to the day when we found out about Adele's diagnosis, there was no lack of love. The tears were because we made this baby, she was ours. We were so scared. The thought of having a baby with Down syndrome was terrifying for us. We had never researched Down syndrome. We only knew what we had read in some books and seen on TV. There was never a moment where we didn't want Adele, not one. There were so many moments where we felt that we weren't capable of this journey. It was not about love. It was about fear and the unknown.
When James and I had sex, yes, that was how both of our children were made, no we didn't think before that there was a chance that our child may have Down syndrome. We didn't sit down and google the stats...what are the chances that a 36 year old woman would have a child with Down syndrome? I guess we were in the wrong.
If you are going to judge me for having real emotions, for being scared, for not having confidence in myself, for questioning what I did wrong, for being sad, for not knowing if we could possibly do this, you don't have a place in my life. You are shallow and unkind. You are not making a difference in the world by criticizing others, all you are doing is making this world a more unhappy place because of your cold remarks and narcissistic attitude.
I make baskets for a reason. I work my ass off to get the word out. I am not doing this for recognition. I am doing this for new families. I am doing this so that families know there are people who care, there are supports, you can do this. I am here for you.
I want to be approachable. I want the termination rate to decline. I want families to come to me and ask for advice. I want to tell them about our journey. I want to share with them that it's not all butterflies and puppy dogs, it is work and there are worries. There is added stress and sometimes you won't have great days. You will feel like you are continuously climbing the mountain, thinking that you will never reach the top, but there are these moments along the way, where you stop, breathe, take in the beauty, slow down and be incredibly thankful for this journey that you have been given.